I'm a newbie to CRPS & this site

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Diagnosed with CRPS almost a month after having a Lumbar Fusion surgery and a Screw Revision surgery within a few weeks apart. My question is concerning the hypersensitivity around my knee and on the inside of my leg. It seems to be getting better with each day that passes. My question is, does this mean the CRPS is going away or is it that the medication is doing what it's supposed to be doing? Thanks in advance for any help. 

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  • Posted

    It depends on the medication you are taking.  If you are on Pregablin, tramcet, neurotropin and tryptanol mix or similar mix of medication, and it's getting better, best to slowly take down the dosage of pregablin.  If it is CRPS the pain level would be a nightmare without this mix of pain killers. 

    You should get a second opinion if you are not on these kinds of meds as you may not have CRPS which would be wonderful news.

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    • Posted

      Hello toshi81218,

      ?I have been diagnosed CRPS and haven't been prescribed any of the above meds you speak of.  I've been given co-dydramol and ibuprofen.  I was prescribed zapain but it makes me drowsy so refuse to take it. None of the above I've mentioned help with the pain and my GP says there isn't a cure, you just have to manage it. 

      ?So, my question to you is - Are you then suggesting I should get a second opinion to confirm CRPS as I haven't been prescribed any meds you mention?   My consultant didn't prescribe me any meds but def diagnosed CRPS. 

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    • Posted

      My Dr referred me to a Pain Management Specialist. He has me taking: Gralise, Nucynta, Dilaudid and Amitriptyline at bedtime. I did not get any relief from the injections and nerve block. My Dr did detect a rather significant difference in temps when he touched my knees. Sometimes my knee feels so tight and swollen, almost like it would pop if I would bend it. I also sometimes have the burning, painful feeling in my groin, almost like my circulation has been cut off.  Funny thing is that I sometimes forget I had two back surgeries because I have not had any back pain at all. 

      If I decide to get a second opinion, what type of Dr would I see?

      Thank You!!

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  • Posted

    Hi Stacy...

    ?It's great to hear that you're improving.  I was diagnosed with CRPS after surgery to my wrist fracture 11 weeks ago.  I've been doing my own research and have read that it can just go in time... others have it for years. 

    ?Have you been prescribed medication specifically for CRPS?  And if so, what is it, please.

    Brilliant news that your pains improving... I live in hope xxxx

     

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    • Posted

      Hi there, I'm learning something new everyday. I don't know if any of the meds my Dr. has put me on are specific for CRPS, but here is my list:

      Gralise, Nucynta, Dilaudid and Amitriptyline at bedtime. 

      The hypersensitivity has gotten better, but all other symptoms seem to be hanging around for the duration. I guess my biggest fear is the possibility of it spreading. I LOVE my job, and I'm still on leave from my two back surgeries. I can't wait to return!!! My return to work date is toward the end of November. However, that date was set prior to my Dr's discovery and diagnosis of CRPS. 

      November 9th is the follow up appointment date with my Surgeon and PM Dr. I have more questions than I do answers so I'm wishing it was tomorrow!!

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    • Posted

      All the meds you listed are for CRPS. Gralise is just a brand of Gabapentin, Nucynta is just Tapentadol which is also for nerve pain and the Dilaudid is just for pain and the Amitriptyline is an anti-depressant which has also been shown to help with nerve pain. 

      All of which I've also been given except for the dilaudid. Aside from the Gabapentin, I took severe adverse side effects from and the only pain medication I can take for my condition is Oxycodone and Gabapentin, which so far as been the best combo for me. Though enough about me...

      If you're not getting breakthrough pain and the pain is in control. I would say that there is a good chance that you may be experiencing remission, hopefully for good.

      I've had CRPS for a year now and even through all the drug combo's I've tried and even though the current one I have now is the best relief I've gotten so far, I still experience 1-2 bad flair-ups. So using me as an example you may be one of the lucky ones who only have this disease/condition for a short time. 

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    • Posted

      It's all still so new for me. I drove to see my GP this morning, and that is the first time in 7 weeks that I have been behind the wheel. I did fine, except for the sitting while driving. It feels like my circulation has been cut off. Couldn't wait to get home and just stretch out. 

      I didn't see you post what area of your body you suffer at. Mine is my left leg. I pray that it is going away, but I wonder how I will deal with winter. I can't let anything touch my leg starting about mid thigh. So, no jeans, leggings etc...I know I'm one of the lucky ones, but it's only been a month. This morning my GP said she could see atrophy and it was so splotchy when I held my legs out together. I do get break through pain, and have to stop whatever it is I'm doing and lay down. That's what works best for me. I don't like taking pain meds, so I don't unless it becomes unbearable. My Dr and my Husband fuss about that. They say I shouldn't wait that long to take something and I should stay on top of my pain and not let it get that bad. 

      I guess its really a guessing game when it comes to finding a med combo that works for each of us. Seems like he has me taking a lot of meds. 

      Thank you for taking the time to reply!!!

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    • Posted

      In the short term, I can understand why you would wait. I also understand if the issue is becoming dependent upon the pain killers is the issue, it was for me but that is the nature of the beast when dealing with long term pain.  

      I suppose it comes down to your own quality of life, if the pain killers help is it better to wait till you're suffering and in unbearable pain to seek relief or is it better to catch it before it gets to that point so you're not suffering so much. 

      As for me, the area affected is primarly the upper right arm along the path of the ulna nerve but has begun to spread down to the lower arm and in my flair ups, I also have just started getting pain in the hand also. 

      Each person is different and in my experience, it takes some time to find a combination of medication which works. For me, as I think I said, traditional medication doesn't work and/or I suffered horrible side effects from them. 

      Whether you have the pain for weeks, months or years then you should ensure that you try to make sure you keep yourself as comfortable as possible for your own peace of mind cause after so long, trying to 'suffer it out' starts to wear on you and even those around you. 

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    • Posted

      Stacy,

      I went back and reread some of your posts and noticed you keep mentioning the hypersensitivity. That is definitely a side effect of CRPS. This is how my dr finally diagnosed me with CRPS when I told him I couldn't stand for anything to touch my leg....not clothes, the sheet, the ceiling fan blowing on it, etc.

      You really need to get a series of gainglon sympathetic nerve blocks ASAP! If this is done in the early stages of CRPS, there's a good chance of remission!

      Praying you can get this in complete remission..,....you have a very good chance since your diagnosis has come so early in the disease!

      Best to you and keep us posted! We love hearing of CRPS'er kicking this!!!

      Browneyes

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  • Posted

    Stacy,

    I'm really hoping and praying that you do NOT have CRPS and that the nerves are just inflamed and they are healing and that's why you are getting better so fast!

    CRPS is the worst pain a person can endure! It is burning like someone is pouring liquid fire down the inside of your effected area. It is pins and needles, a frozen sensation like playing in the snow for hours and then the tingling, burning of thawing out. There is swelling, skin color change, creepy, crawly like bugs under your skin, dripping, pouring sweating. Sometimes you can't move the effected limb.,..I call it jelly leg, where you have no control and the leg goes out from under you. Medications, strong narcotics, opioids, nerve medications, anticonvulsant, muscle relaxers, and antidepressants will help with the pain, but NOTHING takes it away! And sometimes medications, lots of meditactions and different combinations only help some with the excruciating pain.

    Everyone can have different symptoms and it's really hard to diagnose. I'm not saying you don't have CRPS, but I've never heard of someone being diagnosed so quickly and someone recovering so fast. I really, really pray you continue to improve and that you DO NOT HAVE CRPS!

    please keep us posted!

    Browneyes

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    • Posted

      I may have spoke too soon..The past two days have been awful. The feeling in my groin like my circulation has been cut off seems to be lasting longer. Sometimes it feels like something is running down my leg. Each time I feel it, I check my leg. I know there isn't going to be anything, but I guess it's already a habit. I'm having a hard time accepting the fact that this may be my new normal. 

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